It all started in march 2012. Having been dx with rrms at first neuro appointment in June (was sent for two mri’s before appointment) have just been for my second appointment. As the ms nurse is sorting out my DMD’s, she doesn’t need to see me again unless ms nurse or I think I need to. She has not discharged me, just put me on hold. Got a letter in the post the same day to say my driving licence runs out on 16 November, as well and need to return it for my three year licence. I guess that’s that now then. It all seems so quick and final. Must say i don’t think I need to see her again anyway as ms nurse can advise on medication (i think) but just wondered what treatment/ follow ups others have after dx? Mish x
This doesn’t sound right at all. I thought that anyone on DMDs had to be seen by a neuro a minimum of annually. I guess it’s some stupid waiting list accounting ploy and it will free up clinic time I suppose, but it seems a bit harsh to abandon someone who’s newly diagnosed. Saying that, it may not really matter much - as you say, the nurse can advise re meds and other stuff like physio so you don’t really need the neuro unless you need a change of DMD which hopefully you won’t. Tbh, I’ve sometimes gone years without seeing my neuro (my choice, not his) - I got fed up with all the hassle getting there and back for a two minute conversation! 
Karen x
Hi karen, thanks for your reply. Neuro actually said that once her patients start on a DMD’s she doesn’t usually see them again. Suggesting I thought that DMD’s were very effective. Which would be good but I thought they only stopped relapses, on average, by about 30%. Still once you know whats wrong not a lot more can be done apart from changing meds about, which the nurse can organise. She did say something about asking for steroids if i have a relapse, but I think she meant ask ms nurse. Ah we’ll I’ll work it out when it happens. You never know, maybe I’ll be lucky!
The data and what happens in practice with DMDs is pretty confusing. That 30% figure is an average, as you said, but neuros consider the DMD to have failed if we have a bad relapse at which point they should offer us something else - which rather goes against the 30% figure!
Basically, some people do brilliantly on DMDs, some people find they don’t help them at all (so they switch to another) and everyone else is in between.
Remember that DMDs don’t just prevent some relapses though. They also reduce the severity of remaining relapses, delay the onset of disability, reduce disability, can slow progression (although I think it’s only Avonex and Rebif that claim this officially) and even extend life expectancy. So it’s a lot more than just relapse prevention.
I’m completely biased because I’m one of the lucky ones who gets great results from DMDs (first Copaxone and then Rebif when Copaxone stopped working for me after nearly 4 years), but even taking that out of the equation, it still seems like a no brainer for me: DMDs are the only things that have been proven to reduce the effects of MS and I do not like what MS is doing / might do so I’d quite like to do what I can to stop it!
I hope you’re lucky too, whatever you decide
Kx
I’m currently waiting for my first delivery of Rebif. Had a phone call to say account set up just waiting for final paperwork. Or at least I think that’s what message said. Going for a rebismart because my hand doesn’t always work properly and if it effected my left hand the same in the future I would be scuppered! Glad your DMD’s is working so well for you, fingers crossed mine will too. Mish x
Don’t forget to stock up on ibuprofen and paracetamol. If you are staying on Rebif 22, you may not need very many till the side effects wear off, but a lot of people find that 44 takes longer.
The Rebismart is a bit fiddly vs manual injecting, but really nifty - I like it
Kx
I wanted to manual inject but because of my hand problems thought rebismart would be easier. I couldn’t even press a button back in march, I though I was but it wasn’t happening, very strange sensation. So I thought if same happens again my hubby might have to help and would find pressing the rebidsmart easier than manual injections if I need help. Plus I have a rubbish memory ( I am quite often late taking gabapentin) so like the reminder idea. Now what was I talking about…lol M x
I liked the reminder idea too, but the alarm isn’t very loud so I never heard it and ended up switching it off. Thankfully if you’re late, all you have to do is be late with the next one (min 48 hours between injections) and if you miss a day, you just move everything a day later that week and go back to normal the following week. I muddle through somehow!
Kx
Well I will definitely put ibuprofen and paracetamol on the shopping list ready. Thanks for all your really useful tips, especially about being late with an injection. Hopefully it will all be sorted in a few weeks. M x